Journal of palliative medicine
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Case Reports
The Role of Pediatric Palliative Care in Complex Congenital Heart Disease: Three Illustrative Cases.
Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population. ⋯ Involvement of PPC teams in patients with complex CHD can be beneficial for both families and caregivers. PPC teams can aid with advance care planning, goal setting, medical decision making, and bereavement support. Further research is needed to better quantify the benefits of PPC teams' involvement in this population.
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Although limited, the evidence base for Community-Based Palliative Care (CBPC) has shown that it improves patient health outcomes, increases satisfaction, and decreases cost. Minimal data exist comparing points of entry into palliative care and patient transition outcomes. ⋯ CBPC leads to the highest percentage of hospice transitions coming from the home/clinic setting. Differences between small and large hospitals demonstrate a different patient population with higher transitions to hospice and lower palliative care deaths in smaller hospitals.
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Provider-centered factors contribute to unexplained variation in the quality of death (QOD). The relationship between healthcare providers (HCPs) and patients, bidirectional communication, and consistency of longitudinal care planning are important provider-centered factors. ⋯ Trust of the patient and family in home hospice staff, as well as coordination of care among hospice staff, are associated with the QOD for cancer patients dying at home.
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Although a palliative approach to care is recommended for people with advanced dementia, many nursing home (NH) residents with dementia experience burdensome interventions such as hospital transfers at the end of life. ⋯ Advance care planning before an acute event is only the first step in a process of decision making. Attention to and support for decision making is needed at the time of each acute event to ensure that goals of care are maintained.
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Acute myeloid leukemia (AML) is one of the most common types of leukemia in adults, but there is limited information on survivors' quality of life (QOL) after remission. ⋯ The survey content and length were appropriate. Patients reported ongoing fatigue, fears of future test results, getting a second cancer, and recurrence of cancer. Survivors experience ongoing symptoms, highlighting the importance of providers performing ongoing symptom and needs assessments.